Anyone have experience of stoma bags?

Hi everyone. I'm Cath and new here and hope you don't mind me asking this: I need to gave a full hysterectomy in six months as a result of large cysts and kissing ovaries. There is a high chance that damage to my bowel will occur and I will need a stoma etc for a while afterwards while my bowel recovers. This scares me way more than having the hysterectomy. Has anyone here had experience of this? I'd love to know how you coped with it and any advice on what to expect would be wonderful. Thank you!

12 Replies

  • There's a bowel disease group on here who probably has more experience with stoma since they're pretty common with bowel diseases when a part of the bowel is removed.

  • Thank you!

  • I am due to have this surgery (TLH +BSO) in just under a fortnight. I have a large rectovaginal nodule and they've told me the risk of a bowel resection and stoma when they excise this is around 10%. My brother has a permanent stoma now due to colitis and is living his life to the full - although the initial surgery and recovery were tough, he's managing it OK.

    Are you being seen at a bsge centre?

  • I'm not being seen at a bsge centre, no. It's a local hospital for me. A bowel surgeon will be on hand to help out during surgery but I'm still fearful! It helps to hear about people like your bro though. I hope your surgery goes well for you too. With any luck you won't need any stoma at all.

  • If you have endo severe enough that they've suggested a hyst and you have bowel endo please try and get yourself referred to a bsge centre for a second opinion. I was initially offered an abdominal hyst (rather than keyhole) by a gynae at a local hospital last year but opted to go to a bsge centre instead and I am very glad I did as it turns out I have endo on my bladder which the local gynae had completely missed. The bsge surgeon will also be carrying out the surgery keyhole instead of abdominally. Your GP can refer you.

  • Hi. I had a hysterectomy a few months ago, and whilst the risks were clear you never expect things to happen to you. Five days later I was rushed back in, they'd accidentally perforated my bowel and I was seriously ill with sepsis.

    I now have a stoma, it's temporary, but even if it wasn't I wouldn't be here without it.

    Initially I didn't want to look at it, then after a few days I decided I had to get a grip and get on with it. It's really not an issue, apart from gas issues! Obviously you can control wind from your rear end!! With a stoma you can't, other than dietary adjustments. I sometimes have my own flotation device!

    Happy to chat if you want, but be assured, it's really ok. People live with aromas all their life, mines temporary and it sounds like yours would be, if you need one. It sounds so scary but if we really thought about all the risks we'd never have the surgery we so desperately need.

    Good luck x

  • Welsh, thank you! I know in my heart that I will get on with it if it happens. I have to, right? And stories like yours help me understand how manageable it will be. It's no fun to have a bag but the alternatives are so much worse. I'm coming around to the idea slowly. Thank you so much for responding. It really does make a difference.

  • I have had a truly horrific experience, and had two options. Dwell on it, or laugh. Dwelling on it would have potentially taken me to a dark place. I've had to laugh about many things, to get through it all. Don't get me wrong, there have been lots of tears, especially in the early days, but without the stoma I quite literally wouldn't be here.

    Yes. You will get on with it. Because you'll have to. But hopefully you won't find yourself in that position.

    Good luck x

  • Hi CathKraken

    I had a stoma after surgery to remove a rectovaginal nodule caused a fistula. It was 10 years ago now before BSGE centres were widely established. It was quite a shock at the time, as it was totally unexpected and I had only hours to get used to the idea as I had surgery the day after I noticed the fistula (two days after the original surgery).

    It was a steep learning curve, and I was left to get on with it as soon I was able to move about by myself - hours after the surgery. I got over the initial revulsion and by the end of the 5 months when they reversed the stoma I was almost feeling a sense of loss (almost)!

    Once you get the hang of it and get an idea of your bowel movements with the stoma, it is actually very straightforward and easy to manage and the stoma nurses were fabulous. You do need to be more aware of what you eat - diarrhoea with a stoma is not fun!

    I was nervous about social situations, but I was able to get about and do most things with planning. I was lucky that I knew two people who had had a stoma, so I was able to talk to them about it. Please feel free to PM me, if want to chat or have any questions.

    All the best. xx

  • Crikey, Chezza! You were thrown right into it weren't you! It's good to hear your story. Thank you. I'll see my GP about being referred to a centre this week and I'll get the best care I can. How are you doing these days?

  • I'm in pain most days from scar tissue as a result of multiple surgeries - I have a frozen pelvis (organs stuck together with adhesions). It's manageable at the moment and I have just completed a pain management programme, which was very helpful - I would highly recommend it to anyone living with chronic pain. If the pain worsens I may have to consider further surgery to manage the adhesions, but the risk is more adhesions, so not really a road I want to take.

  • Not to mention the risk of damage to surrounding organs, possible resection and another stoma.

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